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Starting EP x 4 Monday 7/10/17

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  • #61
    Sorry I did not post yesterday. It was very long day. I met with Dr. Funt. He is heading this trial with Dr. Feldman. I have agreed to participate in the trial. I still have to be cleared medically first. I do not know where I have been randomized to yet. Early next week I will find out. They want me to stay at Hope Lodge in Manhattan just in case I need medical assistance quickly. I am not sure how I feel about that. Being away from my wife and kids for 4 months is going to be very hard, and on the other hand I can understand why. I was not expecting that. I told the social worker that I plan on working while going through treatment. I had told her that I drove myself to and from MSK during the 4xEP as well as worked and was still able to coach my sons' baseball games even on days when I had treatment. I am guessing that the dose I am about to receive is much higher then that of the dose I received in the 4xEP protocol.

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    • #62
      I can't imagine you will be able to work while on this trial. I do have a question, and forgive me for not going back and looking, but what was your initial prognosis, intermediate or poor?
      Son Grant
      dx 12/21/16 at age 17

      BEP x3
      Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
      2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
      Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

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      • #63
        I will try my best to work throughout this trial. At least as much as I can. My initial prognosis was very good. I was told by all of my doctors that I have the cancer to have since it's highly curable. Seminoma Germ Cell Tumore that was confined to the testis. Stage 1A. The recurrence % was 15. The secondary recurrence % was 3. Why couldn't I win the lottery instead? LMAO.

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        • #64
          My husband is 100% seminoma too. I so wish we were in the 96% cured and never dealing again group. My husband found the two cycles of TIP to be much worse than BEP and the paclitaxel and ifosfamide have to be given inpatient. He lost 20 lbs in 3 weeks on TIP and did not lose any weight on BEP. He ended up getting medical marijuana during TIP which was the only thing that worked. He had previously never tried the drug in his life. Keep us posted about your randomization. I have not been able to find anyone in a similar situation to my husband but it sound likes you are pretty close. How old are your kids? My almost 4 year old has such a hard time with him being gone and the next hospitalizations will be 3 times as long.

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          • #65
            I would assume that I am going to have a harder time with TIP as well, just basing that on the drugs are probably stronger and the does would be higher since I am in the lowest 3%. I am also expecting the high dose to be tough too, but of course not going through it yet I could be way off. I actually gained 40 lbs on 4 x EP last year. I am planning on rolling with the punches as they come at me. I have twin 13 year old boys and a 5 year old boy. I was told today that I will find out next week what group I will fall in to. I have a slew of tests scheduled this week which is part of the process for being cleared to get the high dose if I fall that way.
            I wish the best for your husband and hope he comes out if this on the good side this time.

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            • #66
              Hi there. I'm sorry to hear that you've relapsed but you are definitely in good hands. Just wanted to chime in with chemo comment. My son had 2 rounds of each and his feeling was BEP is better tolerated because you're not confined to the hospital. He found the other was more difficult emotionally which affected how he felt physically. They are long weeks and you need to plan to keep yourself busy with whatever you can manage. TV binging, movies, reading, whatever works. Hang in there.....you GOT THIS!!! xoxoxo

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              • #67
                Thank you the positive words MamAng. I am planning on working again this time as much as I can. I was able to work during the treatments and coach my sons baseball games and practices all summer and the early part of fall during the 4xEP last year, so I am hoping to be able to do at least the work part since I will be inpatient this time. I hope your son is doing well now.

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                • #68
                  Originally posted by Jkratz View Post
                  Thank you the positive words MamAng. I am planning on working again this time as much as I can. I was able to work during the treatments and coach my sons baseball games and practices all summer and the early part of fall during the 4xEP last year, so I am hoping to be able to do at least the work part since I will be inpatient this time. I hope your son is doing well now.
                  Those of us with computer/desk jobs that can be done remote definitely have an advantage. For my 4xEP I filed FMLA just in case, but ended up being able to work almost every day from the infusion center, home, or the office if I was feeling up to it. I only took about 5 or 6 days off total through the 4 rounds. And then breaking my leg 2 years later I have been able to work from home the last 3 weeks since I am not allowed to drive. It would be tough both the monetary and psychological toll both of these would take if I had a labor job that I had to stop doing and file unemployment or such for this amount of time.
                  6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                  6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                  7/7/15: bHCG 56, AFP 42, LDH 322
                  7/13/15 - 9/18/15: 4xEP
                  10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                  10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                  4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                  4/20/16: RPLND @ IU - teratoma only!
                  3/29/2018 all clears up to this date!

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